Abby Lewis, who manages the Recruitment and Business Support activities for KDM says:
“I started with the KDM Group in September 2016, a job I managed alongside my role as a parent carer to my autistic son, Bobby. Bobby is not just autistic; he is also deaf, epileptic and has a profound learning disability, requiring 24-hour care.
Bobby’s disabilities are extremely complex as is the care and supervision he needs. He requires very little sleep to function, unlike most of us, so as you can imagine being his parent carer brought with it a fair share of emotion, challenge, good days and bad, and all too often, days when it was simply all too much.
Some days I felt strong, determined, and full of confidence. Even with only three hours sleep I could find a little positivity to help me focus on routines that a typical day brought with it. I focused on motivators and picked my battles. It was on these days that I planned for our future. I told myself Bobby would live with me forever and that I would always find a way of meeting his needs. Upon reflection those were my favourite days because I believed that although life was not perfect, I somehow could make it work.
Of course, the opposite to those days were the ones that made me feel like I was drowning. Sleep deprivation played havoc with my ability to think straight, I was often weak, exhausted, and consumed by “Mothers guilt.” It was those days that I would struggle to see a positive future, a future where I could meet Bobby’s needs in the years ahead. My heart was often filled with a sense of dread and fear, a fear of the unknown, an inability to see a way forward.
In 2019 life offered up another cruel twist, in that I became a single parent. Due to Bobby’s care needs and having a two-year-old daughter we were unable to leave the house without support. The three of us now experienced life trapped within our four walls. We would watch the world go by from our window, kids biking past, families out for walks, even dogs had more privileges than us. For the next four years we were prisoners in our own home.
A neurotypical child of Bobby’s age has the mental capacity to understand right from wrong, what is acceptable and what is not. Bobby, on the other hand does not. He has no awareness of danger, his communication is limited, which means he gets easily frustrated and that often leads to physically violent outbursts. To add to this, he doesn’t process the aftermath of a meltdown; he doesn’t understand the consequences of his actions which meant living with holes in the walls and doors physically ripped off their hinges.
In 2023, things worsened, Bobby’s care needs became too great for me to manage and in an instant all my fears for his future suddenly crystalised and became real. Bobby, at 11 years old. was moved into a specialist residential placement. Because of the lack of services in my local area he now lives 150 miles away from me. This heart- wrenching change meant I have gone from being with him every day, to visiting him twice a month, and whilst the reality of my situation offers little choice, it doesn’t alleviate the extreme sadness I now live with day to day.
Which brings me to Main.
Bobby started accessing Main around the age of seven, he enjoyed building new relationships with both peers and staff, engaging in his favourite activities and I got to enjoy some much-needed respite which was often spent giving my daughter, Dottie, precious 1:1 time outside of the house. Over the years, Main have experienced their fair share of hurdles with regards to Bobby’s care needs and unpredictability. However, they adapted to ensure his needs were met. They increased staff, enhanced their communication, introduced new motivators. Even when moving premises, they still ensured they met Bobby’s needs. Unlike other service providers that withdrew all support, Main recognised that their support was paramount to my caring journey. The staff have a deep routed passion to make a difference, and that shows.
Unfortunately, despite the need, services are overstretched and underfunded. There aren’t enough places within the local area that offer the much-needed support to families. Main purchased the “Finlay Cooper Centre” in 2019. Whilst a small area of the centre is open and actively helping families, the majority is still very much a building site in need of extensive work.
Main have a vision which will benefit many families and neurodiverse individuals within the local area and due to my personal experience, I have seen first-hand the importance of this vision, and so it has become my aim, with the support of KDM and our like-minded business partner Wolviston Group to help them achieve it.